Last night, there was a fun activity at Sabrina's school involving a play, costumes and dessert. Max typically does not like crowded activities like this. So I decided not to take him. I came home from work, grabbed Sabrina and jumped in the car. As I pulled out of the driveway, Max was standing at the back door, looking at me with an expression that was part sad, part why-are-you-leaving-me-here-with-the-babysitter (Dave had to work late).
I couldn't stop picturing Max's little face the entire evening.
In situations like this, I'm often torn. I don't think Max would have enjoyed the activity, and if he would have wailed and cried it would have disrupted the event for Sabrina (and other people, too). But, who knows, maybe Max would have surprised me. I don't want to go through life leaving him out of stuff.
Years ago, I knew this one family with a disabled kid who they'd never take anywhere. He'd stay home with his caretaker, and the parents and other kids would go do their own thing. To me, this child never actually seemed like he was part of their family. I have this kid in the back of my head at times like last night.
I don't feel guilty when Dave or I take Max out for his own activities and Sabrina stays home. Starting in April, on Sunday mornings Max will be going to a baseball league for kids with special needs (yes, I am psyched!) and Sabrina won't be coming. That seems fine and right to me. So why do I give myself such a hard time about situations like last night?
I think that we all carry around secret little guilt complexes when it comes to our special needs children. Connor doesn't have any siblings yet, so I don't know how I'd feel in this situation, but I already feel guilty that he's not able to participate in so many other things that typical kids his age are doing, so I'm guessing I'd feel like I was depriving him of something no matter whether or not I suspected he'd enjoy an activity. I'm struggling with whether or not to throw him a birthday party when he turns three, because while on the one hand he hates noise and bustle and probably wouldn't enjoy it, on the other hand all of his friends are having birthday parties. It's hard to know what to do in these kinds of situations.
ReplyDelete~Jess
Include the kids in as much as you think they (or you) can take.. As again our friend Cole, the example, he's the only disabled kid in his karate class... Try something different, you may be surprised!
ReplyDeleteKudos for Max and baseball... Was in Little League Challenger Division? Or some other private league for disabled kids?
Opening day here is April 18th, I can't wait to get back to taking baseball photos again!. Please share yours!!! :-)
Whack it good Max! - As I recall one of the tee-baler's I shot last year, when coach asked, what he was going to do when up, a reply "I'm gonna' whack it good!" - too cute!
This was Sabrinas special day, and she deserves one on one time just as much as Max. It is okay no to include him in everything, just as it is okay not to include Sabrina in everything.
ReplyDeleteIn our house we try to do things together as much as possible, but I also know that each kid needs a little one on one time with Mommy and Daddy. So we will take either boy out and leave one behind sometimes. Generally the one left behind wails as we leave, but they also know that they too will have time. Jonathan struggles with this more than Jacob, but he does survive, and it makes him look forward to his time even more.
Your doing a good thing Ellen!
I was going to post about how I struggle with this, too, in my own little way. It makes me really sad sometimes to feel like I'm leaving Gavin out of things. But then Sarah's post about each child getting one on one time brought me back to earth. That was a great way to look at it. I know my sister, who has triplets, spends time with each child alone and it's one of their favorite things. I like looking at it that way...it makes me feel better. Jeez...being a Mommy is SUCH a huge GUILT TRIP, isn't it??
ReplyDeleteIt's the mommy guilt, my dear. In some cases, we're darned if we do and darned if we don't. You most likely would have felt guilty if you had brought Max and he spent the evening being miserable. So try not to be too hard on yourself. You were doing what you knew would make Max feel the most comfortable, after all.
ReplyDeleteOn the subject of including kids with special needs, this one really hit home. We're having a (potentially legal) battle with Daniel's school due to their refusal to include him in certain activities. For example, we recently learned that Daniel is being told to sit off to the side during Music And Movement. He can walk and dance with the best of them, albeit less coordinated on his left side. He was also told to go play in the corner while the rest of the class painted a mural. When I questioned his teachers, they admitted to it and said they're going to keep making him sit out and don't care what we say. There's really no reason at all for him to be held out of these activities. Anyway, before I go off on yet another tangent, that's what exclusion is. Think of it this way - that was your special night out with Sabrina, just the two of you. You'll probably do the same when Max starts baseball. So that's just treating them equally, really.
On that note, I'm so excited for you guys that Max is going to play baseball this year! You'd better post pictures, because I already can't wait to see him play!
I think we're all just trying to do the very best we can. You're doing a great job.
ReplyDeleteMy mom was always very honest with me, maybe sometimes too honest. I was mad once because my cousins got to play soccer, on a team, and I couldn't, and I love soccer. She was just like, "Some people can do stuff other people can't" She put me in an adapted sports program, well she tried, but I hated it. Luckily though all of this I always took swimming so that was my trade off (I'm a much better swimmer than my cousins). People ask me if I'm ever upset to be let out of activities but I'm always like, "Hey I may not be able to run or do half the stuff you can but you can't ride a horse as well as I can so it's cool." Everyone has different gifts and talents disabled or not.
ReplyDeleteWow, that baseball league sounds so exciting!
ReplyDeleteWe think about the scenario from your post a lot, but more in the "what-will-we-do" in the future sense. I will keep that boy in the back of my mind, too, because I would never want Alice to feel like an outsider in her own family. I hope we can adjust when the time comes. There is something to be said for separate activities as kids get older, I think. There's no doubt in my mind that Max knows he is loved and an important part of your family... that thousand-watt smile says it all! But it is good to keep these things in check. Thanks for posting, Ellen!
PS--I sent an email to your gmail account :)
-brandie
Ellen,
ReplyDeleteI just remembered a book that might help you out. I used it when I was teaching. I forgot your email, so can you email me?
We ask ourselves the same questions because "new" activities/environments tend to make Clayton extremely nervous and he just screams and cries the whole time. But we do it anyway just so we can at least say we tried. Don't know which is best . . .
ReplyDeleteThis reminds me a lot of how I have felt in the past about my Henry. Henry has a severe bilateral hearing loss. Both of my first two children went to a private pre-k. Then came Henry. I was so conflicted over what to do for him. I wanted it to be "the same" for him. I wanted him to have what they had. I didn't want him to go to a "different" pre-k. But I kept coming back to something someone said to me years before I had any kids...before I was even married. She said her boys all went to different schools, because they all needed different things. They hand picked the schools their children went to based on their strengths and weaknesses. And that is why I chose a different school for Henry. A program for deaf and hard of hearing (hoh) children. Because that was what was BEST FOR HENRY. And it has been the best decision I could have made.
ReplyDeleteAlways remember that you do what is best for each child. Sometimes that may mean for their emotional stability, sometimes for their intellect, sometimes for their physical strengths or weaknesses. Maybe you'll make mistakes along the way, who knows, but you will always have his best interests at heart. And that is all you can do.
hmm that is hard. I have always done things with my family. Oh if u do not know me I am AZ come visit some time I am 17 and have cp
ReplyDeleteGreat perspective here from everyone. Jess, you said it so well—parents of kids with special needs carry around "secret little guilt complexes" that most other parents don't. Jess, before Max grew to like birthday parties we'd do a quiet celebration at home with a few friends/family, because he enjoyed that best. Now he actually does like busier parties.
ReplyDeleteRich, yes, it is a Little League Challenger Division. Last year, they got to play in Yankee Stadium! You can bet I will post photos the day Max is at bat. I cannot wait!
Sarah you are so right, all kids need one-on-one time. I have to remember that. And Kristen, wise words as well: I really am doing what is best for Max, even if part of my heart feels sad about that.
Johanna, I am seething about Daniel and his school situation. That sounds like clear-cut exclusion.
Sarah: Email me at lovethatmax@gmail.com
AZ: Welcome!
Ellen,
ReplyDeleteWhen I read this, my heart "hurt" for you because I see the parents of my students struggle with this a lot too. I wish there were a way to make that nagging guilt disappear. Because you're awesome and it sounds like you do lots of activities with both Max and Sabrina. It's ok if they don't do everything together. Not even families who don't have special needs children do that.
Leaving Max at home for the night and giving Sabrina special time is completely normal! You are actually doing the BEST thing for Max.
You're such a great mom. Thanks for the post!
~Marianne
One more thing. I have a friend, I'll call her "A" who has very severe spastic CP and is completely dependent on others for nearly everything. But, cognitively, she is like a typical 26 year old.
ReplyDeleteFor years, she went on a big camping trip with her family. But as she grew, it became difficult for her Dad to take care of her out at the camp site. She began staying home from the trip. At first, they scheduled it during our summer sleep over camp time (a kids camp, not the camping trip) but when we graduated from camp, "A" ended up staying home.
It was sad in the beginning - but she had an awesome attitude and realized that it was better for her to stay back. She ended up filling the week with visits to other close friends and turned it into a positive experience.
I saw the pain it caused the whole family to feel that separation. That's another reason why I so understand your feelings right now. But "A's" parents chose to create other special experiences with all 3 of their girls that were just for each girl and their parents. That way, no one ever felt like they missed that special time together
~Marianne
I know what you mean, what you're thinking, what you feel...but I haven't experienced that yet.
ReplyDeleteIf there are school events that are after school hours, we just don't go. If it's birthday parties, we are careful about which ones we go to where. We've even recently had a friend double check if Alex might make it through (which was thoughtful). In the end, we do things like have both of us go (which wasn't possible in your situation) and make it so one of us can leave early if need be. I don't know how it will be in the future. I cross my fingers.
I don't double post comments, but... Marianne I disagree... There is ALWAYS a way if you look hard enough... It's sad that she was left behind, no one should ever have to feel like that, and be 'forced' to choose a different path 'just because'.
ReplyDeleteAs a legally blind master photographer, I adapt my equipment to do what I need it to do. THERE IS ALWAYS A WAY FOR POPLE WHO LOOK HARD ENOUGH!
I know what you are saying, Rich. Believe me, I am the first one to stand up against discrimination, or anyone being treated differently. When I was first told this story, I was LIVID! I said the same thing, "There is ALWAYS a way.
ReplyDeleteSure, they could have found a way - She could have gone. But sometimes, don't you think, you look at a situation and weigh the pros and cons and decide that maybe her time would be better spent a different way? She and her Dad discussed it. And she decided that physically, she was very uncomfortable, even in pain, during the camping. I guess it would have been nice, if they had unlimited funds to pay for special camping equipment or something. Unfortunately, how often does that really happen?
I guess what I'm saying, is that in this situation, what helped, was the fact that the parents created the special weekends, and also that "A" found a different but equally enjoyable way to spend her time. She and her mom ended up having that weekend together.
Is it ideal? Probably not. But it was the best that family could do (as I said, without more money and resources) and in order to make the decision, they asked their child her opinion (she was in her late teens) and had only her best interests at heart. What more can you ask for?
In my house, my special needs baby gets way more special activities than my typical child. I think my typical child will need these times apart from his brother from time to time.
ReplyDeleteI'm sure I will feel some guilt about that too, but guilt isn't going to get us anywhere either.
That's a tough one, Ellen. I think just like our kids need time to figure out how they are going to navigate social situations, we parents need time to figure it out too.
ReplyDeleteI'm still learning those boundaries -- when I should step in and when I should stand aside. I think every parent has to do this on some level. I'm learning that it's OK if I make mistakes too. As long as my kids grow up knowing how much they are loved, all the details will fall into place.
No question how much you love Max, so I think you're going to be just fine! ;)